We are finally home 12 hours after leaving the house this morning. It was a long day, but it went well. Katie didn't have any low sugar problems this morning. She woke up in a great mood, ready to face a hungry day. I got a little apple juice into her before the cutoff time for liquids and we headed out. We had to be at Fletcher Allen by 10 so that they could run an IV with glucose for her to keep her blood sugar up while we waited for her actual appointment. By the time the IV was in, her glucose level was 64. Below 60 is considered low for her so we just made it. After an hour of so of the IV her glucose level was 109. We got the rest of her numbers back too, and a couple of them were interesting. For some reason that nobody explained and I didn't ask, her ANC today was only 980. I'm not sure how it could drop by almost half from what it was yesterday afternoon when all of her numbers were on an up-swing and she hadn't had any medications. Hopefully, there was an error counting or reporting her numbers at North Country yesterday and she didn't really drop. Her hemoglobin was down a little too, to a 9.4. However, those numbers were still good enough to allow her to go forward with her treatment schedule.
She hadn't had anything to eat since about 10pm the night before and we were scheduled for a 12pm lumbar puncture (LP), after which she could eat. Our appointment time got pushed back by delays beyond our control and she finally got the LP around 2pm. Needless to say, she was a very hungry little girl but she handled it well. Josh was with us today too, and Josh and I don't eat around Katie when she can't eat. He was more worried about his belly than she was about hers.
I got to bring home a new gadget today as well. We brought home a glucose meter (typically used by diabetics) with which we have to test Katie's blood sugar levels every morning before eating or drinking and every time she shows signs of having a low blood sugar. We are recording the data to try to get a better idea of how her body is handling sugar. This means we get to be the mean people and pick her finger every day for a while. No length of time was specified, but I was given a 50 day supply and a prescription for refills. I get the feeling that this is going to be with us for a while.
Well, she has had her bed time snack and is snuggled in for a well deserved rest right now. I think I'll follow her lead. Tomorrow will bring a new host of challenges.
Thursday, July 31, 2008
All Done
Katie came through her treatments today just fine. She had a great morning in fact despite the long period of fasting. I guess that big snack before bed last night really did the trick. We are still in the hospital right now, and I found a computer with access to the web so I thought I would put out a quick update. It's nearly 3pm and we still have about another 30-45 minutes left hooked up to her port. Then we have to head down stairs for an x-ray to determine why her foot hurts. After that, we are headed to the toy store and then out to eat. So, we aren't likely to get home until late this evening. I'll post some more details then, but know that everything is good at this time.
Wednesday, July 30, 2008
We're Going In
We got the results of Katie's blood test back and her ANC is 1520. That means we're headed to Fletcher Allen first thing in the morning for a lumbar puncture and other forms of chemotherapy. Of course, the lumbar puncture means that Katie has to be asleep and that means it is a hungry day. Luckily, Katie is cooperating nicely with her new snack ritual tonight. She has to have just the right kind of snacks before bed to keep her blood sugar levels high enough to last through the night, and snacking is even more important on nights before she has to fast for 12 hours. She is eating a chicken burger, some crackers and cheese and drinking a glass of milk right now. That will easily hold her until morning, then we just need to get her to Fletcher Allen early enough that they can get an IV started to keep her blood sugar levels up while she is waiting for her lumbar puncture.
Therefore, I will not be posting anything to the blog in the morning since I will be on the road. But you can expect an update tomorrow evening after we get back home. Today went well. I expect tomorrow to go nearly as well considering what she will be doing.
Therefore, I will not be posting anything to the blog in the morning since I will be on the road. But you can expect an update tomorrow evening after we get back home. Today went well. I expect tomorrow to go nearly as well considering what she will be doing.
Time For a Blood Test
Today is Wednesday and that means we have to go to North Country Hospital for a blood test before tomorrow's treatment. If her ANC is at 750 or above, she is going to get a lumbar puncture for chemo and more chemo through her IV. This does is supposed to be nasty, and the drugs being used are the same drugs that were used when she ended up in the hospital the first time. We aren't looking forward to this round.
If her ANC is still below 750, then the treatment will be put off for another week. I'm hoping they can put it off since she still hasn't fully recovered from the side-effects of the last treatment two weeks ago.
Her morning has gone reasonable well so far with only one trantrum. Her biggest complaint is that her feet hurt which is a real problem because she refuses to walk. I get nervous when she refuses to walk.
If her ANC is still below 750, then the treatment will be put off for another week. I'm hoping they can put it off since she still hasn't fully recovered from the side-effects of the last treatment two weeks ago.
Her morning has gone reasonable well so far with only one trantrum. Her biggest complaint is that her feet hurt which is a real problem because she refuses to walk. I get nervous when she refuses to walk.
Tuesday, July 29, 2008
Going Strong
Just another good strong day for Katie. The only thing of note is the new video window on the right hand side of the blog. That lets me broadcast live video of Katie from my laptop whenever I want to. I'll try to plan for and list show times so people can tune in and see for themselves how Katie is doing.
Monday, July 28, 2008
A Good Day
Katie had a really good day today. She had no issues what-so-ever. She had a great appetite, good energy, and a good attitude. She wants to go outside now and bounce on the trampoline so we are going outside to spend the next 10 minutes doing just that. I hope tomorrow goes this well.
At Home and Doing Well
We did indeed bring Katie home yesterday and she came home with an appetite. She requested tacos for dinner and she ate more than anyone else at the table. She was feeling good. Bed time was a little off because her schedule was thrown off in the hospital so she was still awake at 10pm even though I started reading stories to her to put her to sleep at 8pm. But once she fell asleep, she slept like a log and didn't wake up until 10 this morning. Surprisingly, Josh slept most of that time too.
Starting with the bedtime routine last night, we began managing for hypoglycemia. Just before bed, she had a snack of crackers and peanut butter and a mozzarella cheese stick and a glass of milk. The object was to put some protein and more complex sugars into her system that would last longer into the night, and some fat that would slow the absorption of sugars down even further so that hopefully she would wake up feeling fine this morning. It worked. She felt great this morning and she was able to sleep much later that usual. When she got up, she requested tacos for breakfast...
I'll post another update late this afternoon after I see how the rest of her day is going.
Art and Kathy, this part is for you. We lost the phone number you gave us. It went through the wash in the Ronald McDonald room at the hospital. So, we got your message this morning but we can't call you back. Call us at home.
Starting with the bedtime routine last night, we began managing for hypoglycemia. Just before bed, she had a snack of crackers and peanut butter and a mozzarella cheese stick and a glass of milk. The object was to put some protein and more complex sugars into her system that would last longer into the night, and some fat that would slow the absorption of sugars down even further so that hopefully she would wake up feeling fine this morning. It worked. She felt great this morning and she was able to sleep much later that usual. When she got up, she requested tacos for breakfast...
I'll post another update late this afternoon after I see how the rest of her day is going.
Art and Kathy, this part is for you. We lost the phone number you gave us. It went through the wash in the Ronald McDonald room at the hospital. So, we got your message this morning but we can't call you back. Call us at home.
Sunday, July 27, 2008
She's Going Home!
Well, that was a surprise. The doctor came in, checked her out, said she was fine and since her system was returning to normal she was free to go home. The only thing we have to wait for now is the paper work. Yeah!
On The Rise
Katie's ANC is on the rise still. It is now up to a whopping 280 and climbing. She is feeling good after a solid night of sleep and has been able to get out to spend a little time in the play room. Her temperature, blood pressure and heart rate are all stable. Hopefully, the doctors will take out her IV today so that she gets back into a normal eating habit again. That was the only cranky period this morning - breakfast. She woke up in a beautiful mood, but became belligerent and difficult to deal with when breakfast was put in front of her. She still has some concerns about her stomach even though there is nothing physically wrong with it. She has learned to resist food. After a bit of a battle that lasted long enough to have to reheat her breakfast, she did eat. So far this morning, we have only dealt with the nurses. The doctor should be in soon and we can ask him about the IV.
Saturday, July 26, 2008
Looking Up
I have more data and Katie is being far more cooperative. She allowed her doctor to finally do a physical abdominal exam and the doctor couldn't find anything wrong. So, since the x-rays, CT scans, and physical exam have all ruled out the dangerous problems, the pain is likely to be a ghost pain caused by the Vincristine she received last Thursday. The effects of that dose of Vincristine should be wearing off soon.
Her temperature is a happy 37C. Her pulse while awake and talking is 122. Her blood pressure is a nice 100 over 53. In addition, her white blood cells are climbing and it looks like they are actively fighting some kind of infection. With her own immune system coming back and starting to work, she is coming off some two of the antibiotics and the Benadryl that has been used to control an allergic reaction to one of the antibiotics. This is all very positive and the chances of coming home on Monday or Tuesday are looking better all the time.
Her temperature is a happy 37C. Her pulse while awake and talking is 122. Her blood pressure is a nice 100 over 53. In addition, her white blood cells are climbing and it looks like they are actively fighting some kind of infection. With her own immune system coming back and starting to work, she is coming off some two of the antibiotics and the Benadryl that has been used to control an allergic reaction to one of the antibiotics. This is all very positive and the chances of coming home on Monday or Tuesday are looking better all the time.
A Quick Update
I will post more information later in the day, but for now, I only have time for a short update. Katie is really cranky right now and Amy is struggling with her bad attitude. She is complaining vehemently about her stomach hurting and about being nauseous. But, things are actually looking up.
She ate a little food this morning, which is more than she has been doing for a couple of days. She also left her room for the first time. Amy carried her and walked down the hall with the IV pole in tow as they headed for the bikes that Katie had professed interest in. However, when they got there, she didn't want to actually get down and sit on a bike. The thought of riding was very interesting to her, but actually doing it is still beyond her abilities right now. Maybe later.
Her other stats have improved a little, but most importantly her ANC has started to rise. It is still in the 200's so it hasn't risen much, but it's a beginning and that is a very good sign.
She ate a little food this morning, which is more than she has been doing for a couple of days. She also left her room for the first time. Amy carried her and walked down the hall with the IV pole in tow as they headed for the bikes that Katie had professed interest in. However, when they got there, she didn't want to actually get down and sit on a bike. The thought of riding was very interesting to her, but actually doing it is still beyond her abilities right now. Maybe later.
Her other stats have improved a little, but most importantly her ANC has started to rise. It is still in the 200's so it hasn't risen much, but it's a beginning and that is a very good sign.
Friday, July 25, 2008
Updates At Last
Sorry about the delay in posting to the blog. We had a busy morning of doctor's visits and a CT scan. We have been battling High temperatures, low blood pressure, a high heart rate, and extremely low blood sugar all morning. With these various conditions making her feel pretty bad, Katie was less than cooperative a good deal of the time. However, with that out of they way, I can sit down at a computer and pass along some information.
Despite having a morning blood pressure reading of 42 over 34 and a resting heart rate of 166, Katie is now in far better condition. Her last reading, about ten minutes ago, was 81 over 46 with a resting heart rate of 120. Those numbers are optimal, but they sure look good to us. Her sugar levels this morning were down in the 40's as well despite being on a glucose enriched IV all night. I am happy to report that her sugar levels rose to 112 after a light snack. Unfortunately, her sugar levels are very unstable and are prone to drop quickly for the slightest reason. We spoke with an endocrinologist today who explained that we can't know for sure what is causing her unstable sugar levels at this point because of her condition and the amount of drugs in her system. Therefore, we are just going to have to treat her condition when the problem arises and be aware of situations that will put her at the greatest risk for hypoglycemic states. She will be sent home with a testing kit and we will have to pick her finger every day for a while to monitor her glucose levels and try to keep her from becoming hypoglycemic.
Katie's high heart rate is a warning sign, but not something that the doctors are specifically trying to treat at this point. They believe that it is caused by her body struggling to deal with everything else that is wrong in her body and that it will slow to a normal rate when they get a handle on everything else.
Katie has been suffering from some stomach pains that have so far been unresponsive to treatments and the source is still unidentified. For that reason, a CT scan was ordered this morning and Katie's veins were pumped full of a dye before the scan to help the doctors see everything there was to see. The results... inconclusive. They found extra water around her stomach and on top of her diaphragm but the source of the water is unknown and it is also unknown if the amount of water is enough to cause a problem. It may be IV solution seeping out of her veins. The IV solution is definitely finding its way into various places in her body. Her face is all puffy as if she were having an allergic reaction, but it is just the extra fluid.
Hopefully, I didn't write this in a way that seems all doom and gloom. She does seem to be getting better. She is fever free at the moment with a temperature of just 36.7c (98.06F) and she is relatively content. As the afternoon and evening draw on, she will be watching a lot of TV, playing with some play dough and just hanging out. Much of the crying and whimpering in pain and discomfort has ended. So, we'll wait and see what tomorrow brings.
Despite having a morning blood pressure reading of 42 over 34 and a resting heart rate of 166, Katie is now in far better condition. Her last reading, about ten minutes ago, was 81 over 46 with a resting heart rate of 120. Those numbers are optimal, but they sure look good to us. Her sugar levels this morning were down in the 40's as well despite being on a glucose enriched IV all night. I am happy to report that her sugar levels rose to 112 after a light snack. Unfortunately, her sugar levels are very unstable and are prone to drop quickly for the slightest reason. We spoke with an endocrinologist today who explained that we can't know for sure what is causing her unstable sugar levels at this point because of her condition and the amount of drugs in her system. Therefore, we are just going to have to treat her condition when the problem arises and be aware of situations that will put her at the greatest risk for hypoglycemic states. She will be sent home with a testing kit and we will have to pick her finger every day for a while to monitor her glucose levels and try to keep her from becoming hypoglycemic.
Katie's high heart rate is a warning sign, but not something that the doctors are specifically trying to treat at this point. They believe that it is caused by her body struggling to deal with everything else that is wrong in her body and that it will slow to a normal rate when they get a handle on everything else.
Katie has been suffering from some stomach pains that have so far been unresponsive to treatments and the source is still unidentified. For that reason, a CT scan was ordered this morning and Katie's veins were pumped full of a dye before the scan to help the doctors see everything there was to see. The results... inconclusive. They found extra water around her stomach and on top of her diaphragm but the source of the water is unknown and it is also unknown if the amount of water is enough to cause a problem. It may be IV solution seeping out of her veins. The IV solution is definitely finding its way into various places in her body. Her face is all puffy as if she were having an allergic reaction, but it is just the extra fluid.
Hopefully, I didn't write this in a way that seems all doom and gloom. She does seem to be getting better. She is fever free at the moment with a temperature of just 36.7c (98.06F) and she is relatively content. As the afternoon and evening draw on, she will be watching a lot of TV, playing with some play dough and just hanging out. Much of the crying and whimpering in pain and discomfort has ended. So, we'll wait and see what tomorrow brings.
Thursday, July 24, 2008
We're Settling In
OK, we have some more information. Pneumonia has been ruled out. Katie's lungs are just fine. Her bowels are moving - albeit slowly. Her blood pressure is rising. Her heart rate is slowing. Her fevers keep coming and going still, but none have been very high. She is pretty well stabilized at this point.
One theory that the doctors currently have is that Katie really did have a bacterial infection of some kind and that the antibiotics killed off the bacteria fast enough that the sudden lack of bacteria in her blood stream caused the drop in blood pressure. Nobody knows for sure because the cultures still have not grown any bacteria.
Katie has stopped complaining about aches and pains everywhere except in her belly. I'm not sure why all the other aches and pains have gone away. She is not on any stronger pain killer than Tylenol and she was on that at home and it wasn't working any more. As for her belly pain, the doctors are narrowing the causes down. They have tried anti-nausea medicine and Katie has had a bowel movement with no change in the amount of perceived pain. The next theory to be tested in that she may be experiencing heart burn so they are going to give her an antacid. This is a good thing for two reasons. First, it might help alleviate the pain. Second, the last time we had an extended stay here and remained on antibiotics the entire time, Katie began to vomit blood because the antibiotics messed up her stomach so badly. The antacid should help to line the stomach and prevent that from happening again.
Also, just like the last time, we are here until two things happen. Katie has to be fever free for 48 hours and her ANC has to start climbing again. Until that happens, we are residents of Baird 5. So if things go smoothly from this point on and she has no more fevers and her ANC starts climbing, we could be home as soon as Monday or Tuesday. However, every fever that she gets, will push that date back further and further. Plus, we don't know if her ANC has stopped dropping yet, or if it has further to drop still. Time will tell.
By the way, I haven't mentioned something very important yet. Today is mine and Amy's fourth wedding anniversary. We didn't plan on spending it in the hospital, but at least we get to spend it together. I snuck out first thing this morning and bought her a card in the gift shop. Flowers were out of the question. They aren't allowed in the isolation units that Katie is currently staying in. Amy has promised to give me a present gift on our anniversary as well. She said that I could shared the hospital bed with Katie tonight, and she would take the chair. Now that's love.
One theory that the doctors currently have is that Katie really did have a bacterial infection of some kind and that the antibiotics killed off the bacteria fast enough that the sudden lack of bacteria in her blood stream caused the drop in blood pressure. Nobody knows for sure because the cultures still have not grown any bacteria.
Katie has stopped complaining about aches and pains everywhere except in her belly. I'm not sure why all the other aches and pains have gone away. She is not on any stronger pain killer than Tylenol and she was on that at home and it wasn't working any more. As for her belly pain, the doctors are narrowing the causes down. They have tried anti-nausea medicine and Katie has had a bowel movement with no change in the amount of perceived pain. The next theory to be tested in that she may be experiencing heart burn so they are going to give her an antacid. This is a good thing for two reasons. First, it might help alleviate the pain. Second, the last time we had an extended stay here and remained on antibiotics the entire time, Katie began to vomit blood because the antibiotics messed up her stomach so badly. The antacid should help to line the stomach and prevent that from happening again.
Also, just like the last time, we are here until two things happen. Katie has to be fever free for 48 hours and her ANC has to start climbing again. Until that happens, we are residents of Baird 5. So if things go smoothly from this point on and she has no more fevers and her ANC starts climbing, we could be home as soon as Monday or Tuesday. However, every fever that she gets, will push that date back further and further. Plus, we don't know if her ANC has stopped dropping yet, or if it has further to drop still. Time will tell.
By the way, I haven't mentioned something very important yet. Today is mine and Amy's fourth wedding anniversary. We didn't plan on spending it in the hospital, but at least we get to spend it together. I snuck out first thing this morning and bought her a card in the gift shop. Flowers were out of the question. They aren't allowed in the isolation units that Katie is currently staying in. Amy has promised to give me a present gift on our anniversary as well. She said that I could shared the hospital bed with Katie tonight, and she would take the chair. Now that's love.
3:30 AM At Fletcher Allen
Although the night started out at North Country Hospital, that is not where we stayed. The doctors at Fletcher Allen were not thrilled to hear Katie's vital signs and symptoms so they wanted us brought to them ASAP. Really, we probably just should have driven to Fletcher Allen straight away. Things didn't go as well as they should have at North Country. We left home at 9:30 and Katie hadn't had an IV put in or any blood tested or any medications given until after 11:30. In addition, it was the first time that someone had been on duty who knew how to access Katie's port during one of our emergency visits since this whole process started and that person was unable to properly access her port after a couple of tries. Port access is usually a quick ten seconds and its over with. Last night, each attempt was drawn out to thirty seconds or more with Katie in pain and afraid the whole time. When that failed, an IV was attempted in her arm with the same results. The nurse couldn't get a vein. Finally the actual doctor was brought in and an IV was put in quickly and easily. It was very traumatic for poor Katie and I wish it hadn't happened that way. We have never had a less than excellent experience at North Country before, so I'm sure this was a fluke but is was very disappointing. The IV had only been in for ten minutes when Fletcher Allen made the call to transfer her, then we had to wait for the ambulance to transfer her from North Country to Fletch Allen. By the time Katie arrived at Fletcher Allen it was 3:30 in the morning and that's when treatment finally started.
The nurses here accessed her port in record time, had her on IV antibiotics and a rehydrating solution right away and called in a portable x-ray machine to examine her internal organs since Katie was complaining of stomach and back pain. By 4:30, all tests had been run, all drugs administered, all pictures had been taken and Katie was allowed to go to sleep. She was exhausted.
This morning, we started to get some of the results of those tests back. The fever that she had when she arrived could have been caused by bacteria since her ANC is so low, but the blood cultures haven't grown anything yet which is a good sign. She has developed a loose sounding cough that merits a closer look to make sure there is nothing in her lungs. Pneumonia is a concern with such a low ANC. The x-rays didn't show any problems on initial inspection, but her bowels are full and she is pretty badly constipated. After being sick since Saturday, she is also pretty badly dehydrated and they are hoping that the dehydration is causing one of her other more serious problems right now. Her heart rate is racing and her blood pressure is extremely low. At last check, her heart rate was 207 beats per minute while sleeping and her blood pressure was 79 over 34. Those kinds of readings have everybody a little worried and the pediatric intensive care unit is being called in to have a look at her to see what can be done about the blood pressure and heart rate.
At this point, it doesn't look like we will be going home any time soon. The antibiotic regimen and the treatment schedule that she is on is already looking reminiscent of the last time we were here and ended up staying for more than twelve days. I'll update the blog again when we know more information. For now we are all just recovering from last night and waiting.
The nurses here accessed her port in record time, had her on IV antibiotics and a rehydrating solution right away and called in a portable x-ray machine to examine her internal organs since Katie was complaining of stomach and back pain. By 4:30, all tests had been run, all drugs administered, all pictures had been taken and Katie was allowed to go to sleep. She was exhausted.
This morning, we started to get some of the results of those tests back. The fever that she had when she arrived could have been caused by bacteria since her ANC is so low, but the blood cultures haven't grown anything yet which is a good sign. She has developed a loose sounding cough that merits a closer look to make sure there is nothing in her lungs. Pneumonia is a concern with such a low ANC. The x-rays didn't show any problems on initial inspection, but her bowels are full and she is pretty badly constipated. After being sick since Saturday, she is also pretty badly dehydrated and they are hoping that the dehydration is causing one of her other more serious problems right now. Her heart rate is racing and her blood pressure is extremely low. At last check, her heart rate was 207 beats per minute while sleeping and her blood pressure was 79 over 34. Those kinds of readings have everybody a little worried and the pediatric intensive care unit is being called in to have a look at her to see what can be done about the blood pressure and heart rate.
At this point, it doesn't look like we will be going home any time soon. The antibiotic regimen and the treatment schedule that she is on is already looking reminiscent of the last time we were here and ended up staying for more than twelve days. I'll update the blog again when we know more information. For now we are all just recovering from last night and waiting.
Wednesday, July 23, 2008
Emergency trip to North Country Hospital
After a day of crying and complaining about countless aches and pains, Katie's fever spiked. Unfortunately, her blood tests from earlier today showed that her ANC has dropped to approximately 230. So, according to the rules we were off to the hospital. We have only been here for a few minutes so we don't know what's wrong yet.
The Drama Continues
Katie cries all day and most of the night now. Her whole body hurts and she is too weak to get up. Today, she gets to go to North Country Hospital for blood tests. Tomorrow she gets to go back to Fletcher Allen for a check up and possible transfusion, but no chemo this week. In fact, we get to stop the steroids tomorrow too. I'm interested in her blood counts today. I'm wondering if she is low enough for a transfusion yet.
Monday, July 21, 2008
Unimproved
Katie's day today was much the same as yesterday except for the fact that she seems to have conquered the constipation issue at least for now. She took several naps today, and when she wasn't napping she was lying on the couch or nibbling at some food. No playing and no leaving the house. Those things would have required more energy than she was willing to put forth.
Josh and I did get out of the house for a bit today and we went berry picking and fishing. We found plenty of berries, but not so many fish. We still had a good time.
Josh and I did get out of the house for a bit today and we went berry picking and fishing. We found plenty of berries, but not so many fish. We still had a good time.
Sunday, July 20, 2008
A Day On The Couch
As the title implies, Katie spent most of her day on the couch. If she wasn't on the couch, she was in bed. She took at least four naps today and she never walked once. She did not have enough energy to pick her head up most of the time. Arguing made her tired so we didn't even get many tantrums.
Tylenol was our friend today. She complained of leg pains whenever a dose of Tylenol wore off. The leg pains are caused by the vincristine and there is nothing we can do about them except give her some pain reliever if the pain gets to be too bad.
We are also dealing with constipation again. She doesn't seem to feel that it is a problem yet, but we keep her on a regular regiment of laxatives to keep things flowing and for two days now, nothing is flowing. We even gave her a stronger laxative today that should have worked within six hours and we got nothing. Hopefully, that won't become a problem for her.
We will let you know how things go again tomorrow.
Tylenol was our friend today. She complained of leg pains whenever a dose of Tylenol wore off. The leg pains are caused by the vincristine and there is nothing we can do about them except give her some pain reliever if the pain gets to be too bad.
We are also dealing with constipation again. She doesn't seem to feel that it is a problem yet, but we keep her on a regular regiment of laxatives to keep things flowing and for two days now, nothing is flowing. We even gave her a stronger laxative today that should have worked within six hours and we got nothing. Hopefully, that won't become a problem for her.
We will let you know how things go again tomorrow.
A Pretty Crummy Day
Katie had a pretty much all around lousy day today. The diaper rash is gone and that is about it for the good news. She started the day out with lots of crying... somewhere between 2 and 3 hours of it before she settled down, had a tiny bite to eat and took a nap. She does not have enough energy to play or even walk around for that matter. She was back to laying on the couch again for most of the day. If she wasn't on the couch she was on a parent's lap.
She was miserable, and it was as hard to watch this time as it was last time. The weather was nice today, so she wanted to get outside to walk and play and be a kid, and she told us as much. But every time, we started to get her out to do something, she would get upset and tell us she didn't feel good enough to do it. Then she just wanted to lie back down on the couch.
Her reaction to this week's treatment is a little stronger than her reaction last week or the week before that. Hopefully it wears off again in another day or two and she can get back to being herself.
She was miserable, and it was as hard to watch this time as it was last time. The weather was nice today, so she wanted to get outside to walk and play and be a kid, and she told us as much. But every time, we started to get her out to do something, she would get upset and tell us she didn't feel good enough to do it. Then she just wanted to lie back down on the couch.
Her reaction to this week's treatment is a little stronger than her reaction last week or the week before that. Hopefully it wears off again in another day or two and she can get back to being herself.
Friday, July 18, 2008
Diaper Rash
It may not be the most interesting topic to write about, but today it is Katie's most pressing concern. The doxorubicin, which we were told may make her urine pink, has had no visible effects on the color of her urine but it sure is making its presence known. Katie woke up this morning with a very wet diaper and a very red diaper rash that looked pretty sore. We treated it with a great gob of diaper cream and fresh, dry diapers all day. It looks a little better tonight... not much, but a little. I just put her to bed with a fresh layer of cream and a dry diaper. I'll just have to wait and see how she is again in the morning. And when I go to bed, I will check her again to see if she needs to be changed.
Another Treatment Behind Us
We came to the Burlington area again yesterday for another dose of doxorubicin and vincristine. Things went smoothly and well. Katie's cell counts are dropping now, but the are dropping at the expected rate and she is currently still strong and healthy.
She is back on the steroid (dexamethazone) again this week too, but this is the last week that she will have to take the steroid. I'll be interested in seeing how she reacts to it again this week.
Other than that, we are still here in the Burlington area today to celebrate her cousin's birthday. We spent the night here so that the kids wouldn't miss the birthday party and we would have to drive home and back again. Not to mention, since she is still healthy enough to have visitors, it never hurts to let her play with as many kids as possible.
She is back on the steroid (dexamethazone) again this week too, but this is the last week that she will have to take the steroid. I'll be interested in seeing how she reacts to it again this week.
Other than that, we are still here in the Burlington area today to celebrate her cousin's birthday. We spent the night here so that the kids wouldn't miss the birthday party and we would have to drive home and back again. Not to mention, since she is still healthy enough to have visitors, it never hurts to let her play with as many kids as possible.
Tuesday, July 15, 2008
Things are Going Well
Katie has been doing great these last few days. She is a little temperamental again but not as bad as she was last week when she was on steroids and doxorubicin at the same time. This week it is just the doxorubicin and she does get cranky on it, but without the added kick of the steroids she is able to manage well enough most of the time. So I guess we can rule out either to doxorubicin or the steroids as the sole cause of her really bad moods. She functions just fine on either one alone. But the combination of the two was nasty. We get the combination of the two again this Thursday. ;)
These last few days have been pretty normal for us. I have spent a good deal of time in front of my computer while Katie has played around the house and spent time doing whatever it is her mother is trying to do at any given moment. Josh spent three days with my parents because his cousin Kyler was visiting them for a few days. Whenever Kyler comes for a visit, Josh goes to stay with him. He had a great time playing, fishing, swimming and hanging out.
We also bought all of our pellets for heat this winter and moved them into the basement. Now we don't have to think about that again as the price of heating oil climbs higher and higher. Tomorrow, if it isn't raining again, I get to help build a fence at the farm and then squeeze in some time for homework.
These last few days have been pretty normal for us. I have spent a good deal of time in front of my computer while Katie has played around the house and spent time doing whatever it is her mother is trying to do at any given moment. Josh spent three days with my parents because his cousin Kyler was visiting them for a few days. Whenever Kyler comes for a visit, Josh goes to stay with him. He had a great time playing, fishing, swimming and hanging out.
We also bought all of our pellets for heat this winter and moved them into the basement. Now we don't have to think about that again as the price of heating oil climbs higher and higher. Tomorrow, if it isn't raining again, I get to help build a fence at the farm and then squeeze in some time for homework.
Thursday, July 10, 2008
3 Good Days In a Row
Wellit has been a while since we posted to the blog and Katie has been feeling great ever since my last post. Previously, I blamed her generally bad mood and blah feelings on the steroids, however, she has continued taking the steroids and she has just been a happy little angle again. I'm not sure why or how, but I'll take it. My new theory is that she was feeling the effects of the doxorubicin and that might be what was giving her the hard time earlier in the week. Today is the last day of steroids for now. She gets a seven day break from them. However, we are in Burlington as I write this so that she can get another dose of doxorubicin and vincristine. If she feels bad again in a few days, we'll know that the steroids weren't the problem.
Monday, July 7, 2008
The Steroids Are In Full Effect
The Dexamethazone has taken over the lovable personality that was Katie Grace and turned her back into a very difficult, argumentative, screaming, crying mess for a good portion of each day. It unfortunately only took three days for the steroid to make its presence felt which is not what we were hoping for since she will be on the steroid for five days at a stretch, once per month for the next two years. We were hoping that by the time, the effects were really being felt, the five days would be up and she could basically continue a relatively normal life. It looks like that will not be the case. On a positive note, this current round of Dexamethazone is only going to be seven days on, seven days off, then seven days on again and we are four days into this first seven days.
Today, we are back in the Burlington area again so that Katie can get another dose of chemotherapy at Fletcher Allen while Josh and I wait for her at my brother's house. She gets the drugs she needs and Josh and I get to visit with my brother and his family for the first time in a few months.
Saturday, July 5, 2008
Loose Teeth
Today's post is primarily about Josh because he lost he first two teeth today. He managed to loosen his bottom two front teeth this morning at breakfast when he decided to help himself to a little extra syrup after I had told him that he had enough and left the room. He attempted to open the top of the syrup bottle with his teeth and was shocked and devastated to find that his teeth gave out before the bottle did. It was quite traumatic for him since he had only discovered that his teeth were starting to feel like they could wiggle just a couple of days ago. After his experience with the syrup bottle, he had two really loose teeth and a mouthful of blood. By the end of the day, his grandfather Kelley helped him to wiggle those teeth completely out of his mouth and he now has a classic jack-0-lantern smile. And now for Katie...
She is getting by fairly well, but it is definitely apparent that she has had a dose of chemotherapy that her body is not happy with. She is struggling with being hungry at the same time that she has an upset stomach - so not much food is going in, but she is sampling food constantly. Also, because she doesn't feel quite right, she doesn't want to do much. She wants to be cuddling with a parent or carried by a parent everywhere. She is a little cranky and a little less willing to cooperate than she has been during the last three to four weeks so it looks like our break is over. Its a good thing that we got some of big summer trips done early. We may not get another chance to take her on a big trip away from home again this summer.
She is getting by fairly well, but it is definitely apparent that she has had a dose of chemotherapy that her body is not happy with. She is struggling with being hungry at the same time that she has an upset stomach - so not much food is going in, but she is sampling food constantly. Also, because she doesn't feel quite right, she doesn't want to do much. She wants to be cuddling with a parent or carried by a parent everywhere. She is a little cranky and a little less willing to cooperate than she has been during the last three to four weeks so it looks like our break is over. Its a good thing that we got some of big summer trips done early. We may not get another chance to take her on a big trip away from home again this summer.
Friday, July 4, 2008
Fourth of July
Happy day, all!
We had a good day at Fletcher Allen yesterday. Katie was crabby, of course, but she was also in great spirits on the way home. As toxic as her new meds probably are, Katie appears to be handling them well.
I watched the lumbar puncture yesterday, and that really was interesting. It's amazing what doctors are capable of doing. Dr. Bradeen is friendly and warm, but she is also a pro--the whole thing was pretty impressive. The anesthesiologist was also really good at explaining what Katie was experiencing, so that was helpful, too. I ducked out to get lunch for the kids while Katie slept, but Rick got to witness the echocardiogram. All the components of Katie's heart look good. Aside from this little leukemia glitch (!), she is healthy as a horse. She woke up hungry, but we were ready for her. She had a banana in one hand and a bagel in the other; she took breaks for popcorn. It was a pretty impressive bit of carbo loading. There is a marathon runner in this little body just trying to get out.
While she was sick this morning, she took her meds like a champ and recovered quickly. She ran at least a few miles in great big circles around Joshua's room this morning, shaking her booty and shrieking with pleasure. There were dedicated costume laps (she is a fan of his cowboy hat), and she made me skip the slow song on the album (the Commitments soundtrack) because she just couldn't tolerate the poky pace. She looked pretty darned good.
We are planning to take advantage of her health today. Joshua is in the Barton parade with his t-ball team, and then we will venture out to Gerry and Cindy's camp on Seymour for a party, a swim and some fishing. The kids are very excited about going to the beach, and we're looking forward to having some quiet time with friends. Life is good.
I hope you'll enjoy the day, too. Happy Fourth!
We had a good day at Fletcher Allen yesterday. Katie was crabby, of course, but she was also in great spirits on the way home. As toxic as her new meds probably are, Katie appears to be handling them well.
I watched the lumbar puncture yesterday, and that really was interesting. It's amazing what doctors are capable of doing. Dr. Bradeen is friendly and warm, but she is also a pro--the whole thing was pretty impressive. The anesthesiologist was also really good at explaining what Katie was experiencing, so that was helpful, too. I ducked out to get lunch for the kids while Katie slept, but Rick got to witness the echocardiogram. All the components of Katie's heart look good. Aside from this little leukemia glitch (!), she is healthy as a horse. She woke up hungry, but we were ready for her. She had a banana in one hand and a bagel in the other; she took breaks for popcorn. It was a pretty impressive bit of carbo loading. There is a marathon runner in this little body just trying to get out.
While she was sick this morning, she took her meds like a champ and recovered quickly. She ran at least a few miles in great big circles around Joshua's room this morning, shaking her booty and shrieking with pleasure. There were dedicated costume laps (she is a fan of his cowboy hat), and she made me skip the slow song on the album (the Commitments soundtrack) because she just couldn't tolerate the poky pace. She looked pretty darned good.
We are planning to take advantage of her health today. Joshua is in the Barton parade with his t-ball team, and then we will venture out to Gerry and Cindy's camp on Seymour for a party, a swim and some fishing. The kids are very excited about going to the beach, and we're looking forward to having some quiet time with friends. Life is good.
I hope you'll enjoy the day, too. Happy Fourth!
Thursday, July 3, 2008
It Begins
Today is the first day of the next round of chemotherapy that will last the rest of the summer. It is also a "hungry day" for Katie. I told her that last night and I didn't get much of a reaction out of her so I'm wondering what she will be like this morning when she wakes up and I tell her she can't eat. So far I'm feeling pretty lucky. The last few days she has been up before 7am, but it is currently almost 8am and she and her brother are both still sleeping. I will have to get her up soon though to give her a sugary drink of some kind before 8:30. That is the cut off time for any liquids and if she doesn't get something sugary into her before that time we are going to have low sugar problems again this morning.
We are at Art and Kathy's house this morning. We came down yesterday afternoon and spent the night here to make this morning's treatment a little bit easier. We also went to the movies last night to see the new Pixar film, Wall-e. It was great and the kids loved it. At the end, Katie was dancing in the aisle. We then came back to Art and Kathy's for dinner and a good night's sleep. It is nice to have family this close to the treatment center.
Today's treatments will include an echo cardiogram to get some data on how her heart is functioning in a healthy state before they begin giving her doses of doxorubicin (a cardio-toxin), a lumbar puncture for methotraxate (which includes sedation so she doesn't wiggle with a needle in her spine), and a drug coctail through her port after she recovers from the sedation which will include the vincristine, the doxorubicin, and our old friend dexamethazone (steroid). When all is said and done, she should be feeling fine at the end of the day, but her days are now numbered. I expect that she will have a few more days of feeling fine before she really starts feeling the effects of the drugs.
We are at Art and Kathy's house this morning. We came down yesterday afternoon and spent the night here to make this morning's treatment a little bit easier. We also went to the movies last night to see the new Pixar film, Wall-e. It was great and the kids loved it. At the end, Katie was dancing in the aisle. We then came back to Art and Kathy's for dinner and a good night's sleep. It is nice to have family this close to the treatment center.
Today's treatments will include an echo cardiogram to get some data on how her heart is functioning in a healthy state before they begin giving her doses of doxorubicin (a cardio-toxin), a lumbar puncture for methotraxate (which includes sedation so she doesn't wiggle with a needle in her spine), and a drug coctail through her port after she recovers from the sedation which will include the vincristine, the doxorubicin, and our old friend dexamethazone (steroid). When all is said and done, she should be feeling fine at the end of the day, but her days are now numbered. I expect that she will have a few more days of feeling fine before she really starts feeling the effects of the drugs.
Tuesday, July 1, 2008
The Gods Were Smiling
"The gods were smiling on us today," Rick said. There is no better way to explain our great fortune. Our kids had an amazing day at the Granby Zoo. There were nine of us--three adults and six kids. So many things could have gone wrong--traffic, crowds, injury, illness, weather. This adventure was clearly blessed, however, and we had a perfect day.
The weather cooperated for the first time in weeks. We soaked in the sunshine, greedy for it after its long absence. We rented a wagon for all of our stuff, which worked out well, although there were many jokes about just how rag tag we looked. (Picture the Beverly Hillbillies at the zoo.) The kids were especially interested in the petting zoo--Katie loved the goats--and they got a lot of exercise running from one attraction to another. Granby is very kid-friendly, and picnics are allowed, so we hauled in a ton of good snacks, and the kids ate like locusts all day, slurping down drinkable yogurts and chomping down fruit and crackers. (When Katie complained about her belly at the end of the day, nausea wasn't the culprit for once. She had simply eaten too much!) We hit the water park after a late lunch, and there was something for everyone. Katie liked the lazy river best, and the big kids loved the wave pool. Joshua was fearless. He sought out the wildest water and came up grinning each time a wave flattened him. He was equally fearless in the amusement park; he enjoyed the bumper cars, and he was my partner on the ferris wheel, a ride I have always hated and braved only because he was so excited about it. Rick took Katie on the ferris wheel, too, and she waved happily to her audience down below. She smiled all day long.
The kids were very happy to discover that there was ice cream for sale within the amusement park, and they refueled their tanks. It was seven o'clock, and the park was closing. We realized that we hadn't seen any of the African mammals, so we took the long, sneaky way back to the zoo's entrance. We sprinted to the hippo's enclosure. We ran past lions. We had the gorilla's house to ourselves. We missed the giraffes and the elephants, but we did see rhinos and zebras before security came through to shoo us on out. The parking lot was empty when we reached it--just our two cars and some that must have belonged to employees. The park technically closes at seven, but we didn't hit the road until eight. We took advantage of every opportunity to have fun.
In closing, we have to thank the Kings for their company on this adventure. We traveled with six kids ranging in age from two to eleven. This could have been a disaster. (How many fourth graders want to spend the day with a toddler?) Bless their hearts, ALL of the kids were perfectly good: energetic, enthusiastic, and easy going, animated, friendly and funny. I know that both Katie and Josh had more fun at the zoo because they had other kids they really love to play with. What a day!
The weather cooperated for the first time in weeks. We soaked in the sunshine, greedy for it after its long absence. We rented a wagon for all of our stuff, which worked out well, although there were many jokes about just how rag tag we looked. (Picture the Beverly Hillbillies at the zoo.) The kids were especially interested in the petting zoo--Katie loved the goats--and they got a lot of exercise running from one attraction to another. Granby is very kid-friendly, and picnics are allowed, so we hauled in a ton of good snacks, and the kids ate like locusts all day, slurping down drinkable yogurts and chomping down fruit and crackers. (When Katie complained about her belly at the end of the day, nausea wasn't the culprit for once. She had simply eaten too much!) We hit the water park after a late lunch, and there was something for everyone. Katie liked the lazy river best, and the big kids loved the wave pool. Joshua was fearless. He sought out the wildest water and came up grinning each time a wave flattened him. He was equally fearless in the amusement park; he enjoyed the bumper cars, and he was my partner on the ferris wheel, a ride I have always hated and braved only because he was so excited about it. Rick took Katie on the ferris wheel, too, and she waved happily to her audience down below. She smiled all day long.
The kids were very happy to discover that there was ice cream for sale within the amusement park, and they refueled their tanks. It was seven o'clock, and the park was closing. We realized that we hadn't seen any of the African mammals, so we took the long, sneaky way back to the zoo's entrance. We sprinted to the hippo's enclosure. We ran past lions. We had the gorilla's house to ourselves. We missed the giraffes and the elephants, but we did see rhinos and zebras before security came through to shoo us on out. The parking lot was empty when we reached it--just our two cars and some that must have belonged to employees. The park technically closes at seven, but we didn't hit the road until eight. We took advantage of every opportunity to have fun.
In closing, we have to thank the Kings for their company on this adventure. We traveled with six kids ranging in age from two to eleven. This could have been a disaster. (How many fourth graders want to spend the day with a toddler?) Bless their hearts, ALL of the kids were perfectly good: energetic, enthusiastic, and easy going, animated, friendly and funny. I know that both Katie and Josh had more fun at the zoo because they had other kids they really love to play with. What a day!
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